Tuesday, January 6, 2009

Happy One Year of Pacing

This is pretty cool. On the 1st year anniversary of Dan gaining freedom from the ventilator, [see the count up clock on the side], we want to pass on exciting information of a young Ohio guy, Alex M., who will be the first child implanted with the same DPS. We saw so many youngsters at Hopkins this past summer, and at other rehab hospitals, who will benefit from this wonderful device.

Although we have never met in person, we came to know this family via email/phone shortly after Dan's accident, and they have been a constant source of prayer and encouragement. We are in awe of Beth, a mom who is home with 4 young children, the oldest being a C1&2 quad. It makes our life seem pretty .... easy.

We do remember well the excitement, the testing, the phrentic nerve working, and the apprehension. Please keep Alex, Kevin & Beth in your prayers Thursday; also Dr. Onders, Mary Jo, Jennifer, and others who will be on the medical implant team.
Following is an email from Alex's family:

Time to get excited!!! This coming Thursday, January 8th, 2009, Alex [age 10] will be going to Cleveland, Ohio to become the first child implanted with the diaphragm pacing system by Dr. Raymond Onders . Here is a link to a one minute video showing the system, how it works, and Dr. Onders himself.

The procedure is outpatient, minor surgery, and we are told that Alex should be eating sometime later that same day. He may stay one night in the hospital just for observation. If that happens, he would stay in ICU just because that it is the only place in the hospital that holds home vents [Christopher Reeves was in bed #1, Dan was in #20]. He wants to eat hospital food too:). You can not believe how difficult and expensive it is just to get a room that we will fit in! We have not traveled since the accident [5 yrs ago] so this is ALL new territory.If you want to send prayers or good wishes please do so through email as this week will be hectic. There is also a ramp project going on at our house and has been for the past two weeks.
We will let everyone knows what happens probably on the prayforalex.com site.

Thanks for praying and your support. This is huge!! After the surgery there will be a weaning period to get Alex of the vent. The average weaning time is seven weeks. Some individuals have taken longer [Dan took 4 mths] and some less. Alex will still be getting breathing support but it will be much more natural. The benefits are so numerous. There will be a lot of new things to learn. This is exciting but overwhelming at the same time. We will keep you all posted.

P.S. Dan, Garrett & Bill are headed back to Cedarville to start a new semester. Funding for school is 80% done, but there is no funding for Garrett yet, or other care givers that Dan needs 24/7/365. Dan is not letting any of this denial of care aid (because of "crossing state lines" nonsense) stop him from completing his degree. We will post more about Dan's exact financial needs at a later time.


Anonymous said...

Am good friends of the Alex so to say the least we are thrilled!!!
Am always praying for Dan and Garrett!!!
ps. let me know if you need any once a month nursing procedure

beth malarkey said...

Happy Anniversary Dan!